Organ donation/Fact Sheets

Fact Sheets

The following fact sheets are currently available.

Individual fact sheets can be downloaded as a pdf document using a link found at the bottom of each fact sheet page.

• The NHS Organ Donor Register - A history
• Cornea transplants - the gift of sight
• Organ Donation and Religious Beliefs
• Did you know?
• Transplantation milestones
• Transplants save lives
• The cost-effectiveness of transplantation
• Organ and Tissue Donation - A leaflet for people with learning disabilities

Documents relating to policies and procedures, information leaflets and regular publications can be found on thepublications page.

History of the Organ Donor Register

The NHS Organ Donor Register is, quite literally, a lifesaver. The confidential, computerised database records the wishes of people who have decided that, after their death, they want to leave a legacy of life for others. By 1 January 2011, the NHS Organ Donor Register contained the names of more than 17.7 million people.

Launched in 1994 following a five-year campaign by a donor family, the register is operated and maintained by the Organ Donation and Transplantation Directorate, part of the special health authority NHS Blood and Transplant. John Cox, a retired civil engineer, and his wife Rosemary saw the need for an official record of a person’s wishes to be an organ donor after their 24-year-old son Peter died in 1989, following a brain tumour.

Peter had asked before his death for his organs to be used to help others, but his parents found that although patients in need of a transplant were listed on a central NHS computer, there was no equivalent register for potential donors. The West Midlands couple, with the help of their daughter Christine, began their campaign. The breakthrough came when Christine made an impassioned plea from the rostrum for a register of donors’ wishes, during a health debate at theConservative party conference at Blackpool in 1993. Health Secretary Virginia Bottomley, who was at the conference, pledged there and then to set up an NHS Organ Donor Register (ODR).

Tom Sackville, then the Health Minister for transplantation, immediately began putting the plan into action and, after a whirlwind of consultation and co-ordination, the new register was launched on 6 October 1994. Launching the scheme, Mr Sackville, MP for Bolton West, heralded the database as a landmark in the development of organ donation and transplantation in the UK.

The register contains the surname, forenames, date of birth, sex and address of the potential donor. People can opt for any part of their body to be transplanted or for specific organs only – kidneys, heart, lungs, liver, pancreas and eyes. Individual records are matched with NHS numbers to ensure that registrations are not duplicated. Details are amended or removed as required. There is no upper or lower age limit to joining.

The organ donor leaflet, which carries the organ donor card, was adapted to include a 

registration

 form and a freepost facility. Four million of these new leaflets were printed and distributed via hospitals, GPs’ surgeries, chemists and post offices.

An advertising campaign persuading people to join the new register was launched the following year. Seventy-eight thousand balloons, symbolising the number of transplants and donors recorded in the UK and Ireland since 1972, were released from Crystal Palace. Advertisements were placed in national and local newspapers and leaflets explaining the scheme were delivered to more than 19 million households.

A key element to the success of the register was the decision to enable people to let their wishes be known through an organ donation tick box on driving licence applications. Another route to the register opened in April 1995 enabling people to join when they register with a GP.

By the end of 1995, more than 2,330,000 people had joined the register. That figure had soared to 8,440,000 by the end of 1999 and in January 2005 the number of people who had made a life-giving decision passed 12,000,000. By the January 2009, the total had reached the 16,000,000 target set by the Government in 2001, this was a year ahead of schedule.

The Driver and Vehicle Licensing Agency (DVLA) and GP registration forms remain the two most popular methods of joining the register. The DVLA scheme alone has been used by nearly eight million people to make their wishes known. Holidaymakers are able to sign on with leaflets sent out to applicants for UK passports and the new European HealthInsurance Card (EHIC), and Boots includes a tick box for people to join the register on its Advantage loyalty card application form. Dozens of UK charities also work tirelessly to raise awareness of organ donation and transplantation.

The 10th anniversary of the ODR was marked by a year-long challenge to the nation, from 6 October 2004 to 5 October 2005, to add one million more “lifesavers” to the register during this period. The government has now set a target of increasing the number of people on the register to 25 million by 2013.

In November 2009, multi-media organ donation campaign Prove it! was launched. The campaign aimed to convert people's good intentions about organ donation into action by registering on the NHS Organ Donor Register. Road showswere held in 20 locations across England, Northern Ireland and Wales. Within the first few months of the campaign more than half a million new people joined the register, taking the total to over 17 million and representing a rise from 27 per cent of the population to 28 per cent.

With the introduction of the Human Tissue Acts on 1 September 2006, which give precedence to the wishes of the donor, it is hoped that more families will be encouraged to respect their loved one’s wishes. It is important that you discuss organ and tissue donation with the people closest to you so that, if the time ever comes, they will find it easier to confirm your wishes to NHS professionals

Cornea transplantation

• Corneal transplants are successful sight-saving operations, with 93% of transplants functioning after one year. By five years, 74% of transplants are still functioning and many will continue for many more years after that.
• The first successful corneal transplant was performed in Olomouc, Moravia, (Czech Republic) on 7 December 1905.
• Last year (2009-10) 3100 people had their sight restored by corneas supplied through NHS Blood and Transplant (NHSBT) an increase of 12% on the previous year.
• Last year, 2,249 people donated their eyes after their death but there is still a major shortage of corneas in the UK. Many more people would benefit from a sight-saving transplant if more eyes were donated.
• 269 (33%) of the 959 deceased solid organ donors also donated eyes in 2009-10.
• As with solid organs, the sooner that eyes are retrieved the better the transplant outcome. However, corneas can be donated upto 72 hours after someone has died.
• There is a shortage each year of approximately 500 corneas. The number of requests to NHSBT that cannot be met has increased owing to increased demand.
• The increased demand has been brought about by advances in corneal transplantation.
• People of all ages can donate eyes and in 2010 60% of eye-only donors were over 70 years old.
• The eye banks match recipients with corneas from similar aged donors and recent increases in the age of donors has resulted in a shortage of quality corneas for younger recipients
• The shortage of corneas from younger donors is evident from the increase in the average age of eye donors, which has increased from 64 yrs to 71 yrs in the past five years.
• Although eye donation and retrieval usually occurs in hospitals, successful donation can also occur from hospices and funeral directors.
• Both old and young patients benefit from cornea transplants. The youngest person to receive a cornea transplant was just a few days old and the oldest was 104.
• The most common reason for corneal transplantation in younger people is a condition called keratoconus. This condition accounts for one-quarter of all corneal transplants and mainly affects younger people; average age of 29.
• 59% of cornea transplant recipients are male and more men than women donate their eyes - the ratio of men to women is about 3:2 for eye-only donors.
• More than 52,000 cornea transplants have been recorded on the UK Transplant Registry since the Corneal Transplant Service (CTS) began in 1983.
• The CTS was launched to give equal access to corneas throughout the UK.
• 90% of transplants use corneas stored in the CTS Eye Banks in Bristol and Manchester, which use special techniques to store the corneas for up to four weeks. Corneas are sent to the CTS Eye Banks from hospitals throughout the UK for storage and subsequent distribution to more than 200 cornea transplant units.
• The NHS Organ Donor Register invites people to specify which organs they wish to donate. At the end of March 2010, 87% of people joining the register indicated a willingness to donate all organs and tissue. Only 9.3% declined to donate their corneas.
• There are now ten hospitals around the country with dedicated eye coordinators funded by NHS Blood and Transplant, aiming to maintain or increase supplies of corneas for transplant.

About the cornea

• The cornea is the clear tissue at the front of the eye that lets in light and helps focus it on the retina so that we can see.
• Disease or injury can make the cornea cloudy or distorted in shape, causing loss of vision.
• The cornea is very prone to becoming scarred following infections such as ulceration of the cornea with contact lens wear.
• A corneal transplant replaces diseased corneal tissue with a disc of healthy tissue from a donor.
• The procedure is straightforward and usually takes about an hour to complete.
• There is no upper age limit to eye donation many successful transplants have been performed with corneas from donors in their 90s.
• The most common reason for corneal transplantation in younger people is a condition called keratoconus where the cornea becomes misshapen and cone-shaped.
• In older people, age-related or inherited conditions may lead to cloudiness of the cornea.
• Transplants are also needed to remove scarring caused by herpes, the cold sore virus, which can infect the cornea.
• UK Rotarians help to promote eye donation and encourage people to join the NHS Organ Donor Register. Thecampaign was launched in Bristol and Bath in 1986.

Organ Donation and Religious Beliefs

• All of the UK´s major faiths including Buddhism, Christianity, Hinduism, Judaism, Islam and Sikhism support organdonation and transplantation. Many actively promote it.
•  Within each religion there are different schools of thought on donation, but all accept that it is down to individual choice.
• NHS Blood and Transplant works closely with faith leaders, and with their support produces leaflets explaining more about organ donation and religious beliefs
• Anyone who has doubts as to whether their religion or faith allows them to donate is encouraged to seek advice from their local religious leader.
• Currently NHSBT does not record donors´ religions on the NHS Organ Donor Register but anyone in favour of donation or joining the Register should inform their relatives of any beliefs they hold that reflect their religion so that this can be taken into consideration at the time donation is being discussed.

Buddhism

• There are no injunctions in Buddhism for or against organ donation.
• In some traditions, the moment of death is defined according to criteria which differ from those of modern Western medicine, and there are differing views as to the acceptability of organ transplantation.
• The needs and wishes of the dying person must not be compromised by the wish to save a life. Each decision will depend on individual circumstances.
• Central to Buddhism is a wish to relieve suffering and there may be circumstances where organ donation may be seen as an act of generosity. Where it is truly the wish of the dying person, it would be seen in that light.
• If there is doubt as to the teachings within the particular tradition to which a person belongs, expert guidance should be sought from a senior teacher within the tradition concerned.

Christianity

• The Christian faith is based upon the revelation of God in the life of Jesus Christ. Jesus taught people to love one another and to embrace the needs of others.
• Organ donation can be considered by Christians as a genuine act of love.
• Christians believe in eternal life, and preparing for death should not be a source of fear. Nothing that happens to our body, before or after death, can impact on our relationship with God.
• Ensuring that we are on the NHS Organ Donor Register and that relatives know of our wishes in advance will help to relieve loved ones of anxiety if the opportunity to donate arises.

Hinduism

• There are many references that support the concept of organ donation in Hindu scriptures.
• Daan is the original word in Sanskrit for donation, meaning selfless giving. In the list of the ten Niyamas (virtuous acts) Daan comes third.
• Life after death is a strong belief of Hindus and is an ongoing process of rebirth.
• Scientific and medical treatises (Charaka and Sushruta Samhita) form an important part of the Vedas. SageCharaka deals with internal medicine while Sage Sushruta includes features of organ and limb transplants.

Judaism

• In principle Judaism sanctions and encourages organ donation in order to save lives (pikuach nefesh - the obligation to save life in jeopardy). This principle can override the Jewish objections to any unnecessary interference with the body after death and the requirement for immediate burial.
• Families my be concerned that giving consent for donation may not be consistent with the honour and respect that Jews believe is due to the dead (kavod hamet). Judaism considers each case as different, and recognises that any known wishes of the dead person can be valuable.
• In Judaism, whether or not the wishes of the dead person are known, it is widely recognised that families are entitled to decide for themselves; and that they will often wish to consult with their own experts in Jewish law and tradition before making a final decision.
• Judaism approaches the question of organ donation very much on a case-by-case basis

Islam

• In Islam there are two schools of thought with regard to organ donation. The human body, whether living or dead, enjoys a special honour and is inviolable. Also, fundamentally, Islamic law emphasises the preservation of human life.
• The general rule that 'necessities permit the prohibited' (al-darurat tubih al-mahzurat), has been used to support human organ donation with regard to saving or significantly enhancing a life of another provided that the benefit outweighs the personal cost that has to be borne.
• In 1995 the UK-based Muslim Law (Shariah) Council resolved that the medical profession is the proper authority to define death, and that brain stem death constitutes the end of life for the purpose of organ transplantation.
• The Council supports organ transplantation as a means of alleviating pain or saving life on the basis of the rules of the Shariah

Sikhism

• The Sikh philosophy and teachings place great emphasis on the importance of giving and putting others before oneself.
• Sikh Gurus devoted their lives for the benefit of humanity and some even sacrificed their lives looking after the welfare of others.
• Seva, or selfless services, is at the core of being a Sikh; to give without seeking reward or recognition and know that all seva is known to and appreciated by the Eternal. Seva can also be donation of one´s organ to another.
• There are no taboos attached to organ donation in Sikhism nor is there a requirement that a body should have all its organs intact at or after death.
• The Sikh faith stresses the importance of performing noble deeds and there are many examples of selfless giving and sacrifice in Sikh teachings.

Did you know?

• You are more likely to need a transplant than become a donor.
• A donor can donate a heart, lungs, two kidneys, pancreas, liver and small bowel and can restore the sight of two people by donating their corneas.
• Donors can also give bone and tissue such as skin, heart valves and tendons. Skin grafts have helped people with severe burns and bone is used in orthopaedic surgery.
• The majority of relatives agree to organ donation and with the introduction of the Human Tissue Acts on 1 September 2006, which make the wishes of the donor paramount, it is hoped that more families will be encouraged to respect their loved ones wishes. It is important that you discuss organ and tissue donation with the people closest to you so that, if the time ever comes, they will find it easier to confirm your wishes to NHS professionals.
• You can make a permanent record of your wishes by joining the NHS Organ Donor Register.
• Most organ donations come from people who have died while on a ventilator in a hospital intensive care unit. Organs, particularly hearts and lungs, deteriorate very quickly without an oxygen supply and the ventilator is able to keep blood and oxygen circulating after death.
• Traditionally organ donors have come from two groups: road accident and brain haemorrhage patients. Improved road safety and medical intervention mean that fewer people in both groups are dying.
• The age of people who have donated organs after their death has changed in the past decade with more aged over 50 and fewer younger donors. Older donors are less likely to be able to donate as many of their organs as younger people, as some organs may become less suitable for transplantation as people age. But organs from people in their 70s and 80s can be transplanted successfully.
• The number of people needing a transplant is expected to rise steeply over the next decade due to an ageing population, an increase in kidney failure and scientific advances resulting in more people being suitable for a transplant.
• Black people are three times as likely as the general population to develop kidney failure.
• The need for organs in the Asian community is three to four times higher than that of the white community. This is because conditions such as diabetes and heart disease - that can result in organ failure - occur more often in the Asian population.
• The number of living donor kidney transplants has more than quadrupled in the last 10 years and now account for one in nearly three of all kidney transplants.
• The oldest solid organ donor ever recorded in the UK was 84.
• The oldest recorded cornea donor was 104.
• The oldest recorded recipient of an organ in the UK was an 85-year-old kidney patient.
• The oldest recipient of a cornea transplant in the UK was 104.
• Surgical techniques, such as splitting livers, have meant that a donor can help more patients than ever before.
• Repeated surveys show that the majority of the public support organ donation. The last survey conducted in 2003 for UK Transplant showed that 90% of people support organ donation.
• All the major religions support organ donation and many actively promote it. Link to Factsheet 3 Religious perspectives
• 30% of people on the NHS Organ Donor Register are aged between 16 and 25 when they join. A further 24% are aged between 26 and 35.9% are 65 or over when they join.

Transplants save lives

• Professor Sir Magdi Yacoub described transplantation as "one of the great success stories of the latter half of the 20th century".
• Surgeons have been saving the lives of dying people through transplantation for more than 50 years.
• The first successful transplant was of a cornea on 7 December 1905 in what is now the Czech Republic.
• The first major organ transplant success involved the donation of a kidney between living twins in Boston, USA, on 23 December 1954.
• The first heart transplant was performed in South Africa in 1967, by Dr Christiaan Barnard.
• Transplants are vital operations and their success depends entirely on the generosity of donors and their families who make this life-saving gift.
• The UK’s NHS Organ Donor Register was launched in October 1994 and by April 2010 included the names of over 17.1 million people who had pledged to donate their organs for transplant after their death.
  Waiting and hoping
• More than 10,500 people need an organ transplant in the UK.
• Last year (2009-10) a record 3,709 people’s lives were transformed by a transplant. More than one in four of all transplants are from living donors.
• Transplants are now so successful that many more patients can be considered for treatment in this way.
• Advances in surgical skills and better drugs mean that a year after surgery:
  • 96% of kidneys in living donor transplants
  • 93% of kidneys from people who have died
  • 91% of liver transplants
  • 83% of heart transplants
  • 79% of lung transplants

are still functioning well. These figures are improving all the time.

• The median (average) waiting time for an adult kidney transplant is 1,110 days. Children, who are prioritised in the matching sequence, wait on average 277 days.
• Adults wait an average of 184 days for a heart and 519 for a lung. Children wait an average of 93 days for a heart.
• Adults wait an average of 149 days for a liver transplant, while children wait an average of 86 days.
• About 1,000 people die every year in the UK while waiting for an organ transplant or because they become too ill to survive an operation and are removed from the list.

Between 1 April 2009 and 31 March 2010:

• 3,709 organ transplants were carried out, thanks to the generosity of 2,021 donors.
• 2,739 patients’ lives were dramatically improved by a kidney or pancreas transplant, 160 of whom received a combined kidney/pancreas transplant.
• 978 lives were saved in the UK through a heart, lung, liver or combined heart/lungs, liver/kidney, liver/pancreas or heart/kidney transplant.
• A further 3,100 people had their sight restored through a cornea transplant.
• Organs from 959 deceased donors were used in the UK to provide 2,647 transplants.
• A record number of 552 non-heartbeating donor kidney transplants took place and accounted for one in five of all kidney transplants.
• A record number of 99 non-heartbeating donor liver transplants took place, a 24% increase on 2008-09.
• Nearly one in four (more than 24%) of liver transplant recipients were aged 60 or over, while patients aged under six received over 8% of liver transplants.
• 33% of heart transplants were given to patients under 18, while patients over 60 received 6% of all heart transplants.
• Patients with cystic fibrosis or fibrosing lung disease received 40% of combined heart/lung and lung-only transplants.
• More than one in six kidney transplants, including living donor transplants, were received by people of minorityethnic origin in the UK.
• Living donor kidney transplants are increasing – 475 in 2004-05, 589 in 2005-06, 690 in 2006-07, 831 in 2007-08, 927 in 2008-09 and 1,038 in 2009-10 – and now represent more than one in three of all kidney transplants.
• 16 living donors gave a kidney altruistically to unknown recipients.
• 32 living donors gave kidneys that were used in ‘paired’ transplants.